Four of the five members of the Lathrop family have had or will need a kidney transplant due to polycystic kidney disease. Stephen Lathrop, left, needs a second kidney transplant because the kidney he received from his wife, Sharon, center, in 1999 became damaged from a virus. The couple's daughter, Sarah Lathrop, right, is preparing to begin dialysis and knows she will need a kidney transplant in the near future.
(Carolyn Kimmel)

"It's hard to realize that all my kids have this.It's been hard. I won't deny that,'' said Sharon Lathrop.

The thought of one organ transplant can be overwhelming for a family, but what about four? For the Lathrop family, that’s reality. Four of the five of them has had or will need a kidney transplant.

“It’s hard to realize that all my kids have this. It’s been hard. I won’t deny that,” said Sharon Lathrop, the only member of the Mechanicsburg family who doesn’t need a new kidney. “But it’s so much better for everyone involved to have a positive attitude.”

Her husband, Steve Lathrop, 66, has polycystic kidney disease, or PKD, a genetic condition in which clusters of cysts develop that overtake the function of the kidneys, making kidney failure inevitable. The only treatment for PKD is a kidney transplant.

The Lathrops have autosomal dominant PKD, which means there is a 50 percent chance that a parent will pass the mutation to a child. In the Lathrop family, there was 100 percent transmission – all three children have the disease. (The other form of PKD is autosomal recessive, which is rare.)

“You have thousands of filters in the lining of the epithelial cells in your kidney, which are called nephrons. Most people have a genetic shut-off to stop the lining from growing, but when you don’t, these fluid-filled cysts develop, said Sarah Lathrop.

“At a certain point, the nephrons stop filtering waste out of the blood, toxins build up and it can kill you,” said the 37-year-old Grantham resident, whose training as a physician’s assistant helped her understand the disease that affects her and her family.

Dialysis is a temporary option

The kidneys’ main function is to clear the blood of toxins and excess fluid through urine. When PKD impedes that process, dialysis is a stop gap measure while waiting for a kidney transplant.

Sarah Lathrop is anticipating the start of dialysis in the next six months. Dialysis is begun when kidney function is at about 10 percent; hers is functioning at 15 percent.

Her older brother, Jeff Lathrop, 41, who lives in Ohio, had a kidney transplant in July after being on dialysis for six months. A graduate of Messiah College in Mechanicsburg, Jeff received his kidney from a college buddy.

Her younger brother, John Lathrop, 33, has about 40 percent kidney function, she said. Symptoms can take upwards of 30 years to develop, but he already knows he is headed for the same fate as his siblings.

“My first symptom was fatigue. I started running out of space in my abdomen. My right kidney is pushing up against my liver and it’s getting so big that it’s causing my liver to drop out of my rib cage,” said Sarah Lathrop, demonstrating how, if she relaxes her abdominal muscles, her stomach protrudes.

Normal kidneys are about the size of a fist and weigh about a third of a pound. When PKD is present, the cysts can be as large as a grapefruit and the kidneys can weigh several pounds. The cysts can burst and become infected, which is very painful. Other organs, such as the liver, pancreas and ovaries, can also be affected.

Still, the Lathrops insist they feel fortunate.

“This is treatable,” said Sharon Lathrop, 64, a registered nurse. “We have bad genes, but it’s much different than having renal failure due to diabetes or high blood pressure. When we get a transplant, we’ll be back to normal. The disease can’t infiltrate the new kidney.”

Sharon Lathrop speaks with “we” because, although she doesn’t need a kidney, she gave one – to her husband in 1999 in an operation that she said was less painful than giving birth.

Within 24 hours of the transplant, Steve’s PKD symptoms were gone. Unfortunately, he later got a virus in the donated kidney that damaged it and now he needs a second transplant.

Disease remains silent for years

Steve Lathrop didn’t know he had PKD until he was an adult.

He was 33 when he got elbowed in the ribs while playing basketball and the blow tore the lower lobe of his kidney, which, unbeknownst to him, was enlarged. He was diagnosed with PKD, the tear healed and he was nearly symptom free for years.

“Then, things began to get more difficult. I began to get really tired and it was an effort to do anything,” said the retired state environmental planner.

In 1998, he went on the national transplant waiting list and began looking through the family for potential donors. That’s when the Lathrops found out all of their children had PKD.

“I was very discouraged to find that out. It’s a manageable disease, but still, you don’t want to burden your kids with that,” said Lathrop, who has been on dialysis for the past three years as he awaits a match for his second kidney transplant.

Faith helps family cope

The family shares a strong faith in God that sustains them, they said.

“We look at things in a larger view than just our own lives so it doesn’t seem like such a negative, end-of-the-world thing,” Sharon Lathrop said. “We’ve had many instances of good medical care and it has made us more sensitive to people who struggle in similar ways.”

“If I die, I die and I know where I’m going,” Sarah Lathrop said. “I work as if it’s dependent on me, but I trust God through it all.”

She is in the process of figuring out how she will juggle needed dialysis with her work schedule. She’s also thinking about her own transplant options.

A kidney from a live donor will last 20 to 25 years whereas a cadaver kidney will last about 10 to 15 years, said Dr. Harold Yang, medical director of the transplant program at PinnacleHealth System in Harrisburg.

Recipients of live donor kidneys also usually need smaller doses of immunosuppressant medications, leading to few side effects and complications.

There’s a good chance that all the Lathrops will need two, even three, kidney transplants in their lifetimes.

“I know what’s coming down the pike; it’s called a big train,” Sarah Lathrop joked. “You have to have a sense of humor about it.”

While she takes the disease in stride, she is worried for her father. “My fear is he won’t be here . . . of 100 people who start dialysis, only 34 are alive five years later,” she said. “My dad has been such a rock star handling all this with such a positive attitude and a core of strength so that it’s not scary for us.”

Recently, she organized an event called “Dare to Donate Times 3” to collect blood, sign up kidney donors and take cheek swabs for bone marrow and stem cell registries. More than 200 people turned out and donors gave 165 pints of blood at the event, which was held at the family’s home church, West Shore Evangelical Free Church in Mechanicsburg, she said.

“My dad easily has 20 more good years to go,’’ Sarah Lathrop said. “I want him to get a kidney before me.”